For two long years, Patti Saylor has advocated for change after the death of her precious Ethan. It has meant long hours, countless miles of travel and hours in meetings. The emotional toll of reliving that terrible evening over and over as she raises awareness and tries to ensure that something like this never happens again is unfathomable.

The Down syndrome and disability communities have been behind her, helping when and where we could, but for Patti and her family, this has been a very personal journey. There is good news however! This has been a week of breakthroughs worth celebrating! Today, I want to take a moment and update our community on some of the phenomenal progress that has been made, and celebrate Patti, the Saylor/Richmond families, and the thousands of people who have been touched in some way by #EthansLegacy.

Justice is something of a hot topic lately. News reports of another person with a disability being mistreated or lost in the system seem to appear daily. One organization that focuses solely on finding justice for our loved ones is the National Center on Criminal Justice & Disability (NCCJD).

Americans with disabilities are victims of violent crimes at nearly three times the rate of their peers. ~David Perry - The Atlantic

We asked the The Arc NCCJD to tell us a bit about what they do, and how it relates to a cause near and dear to us here on The Road - #JusticeForEthan. Our thanks goes to Eliana Peckand the rest of the staff at NCCJD for what they do and for taking the time to write this post!

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has. ~Margaret Mead

Today we look at grassroots advocacy and what can happen when - as Margaret Mead said and fictional President Bartlett borrowed- a small group of people become committed to change.

#JusticeForEthan

Our guest blogger today, put down his camera long enough to write about the process of making "Justice For Ethan - The Movie" and what he sees as #EthansLegacy.

Over the past year and a half this project has taken on a life of it's own. Documenting the progress and momentum created by advocates and legislators in Maryland has been incredibly rewarding. The search for answers has taken the place of accountability working toward addressing the lack of training our civil servants receive on how to interact with people with disabilities.

Online conference - no travel involvedLiving, Learning & Leading for a Global Impact on the Down Syndrome community.

Sessions on Adult Issues

We are so excited for the 321 eConference this year! Starting on World Down Syndrome Day ( #WDSD15 ), there will be three days of learning, sharing, and advocacy !

We here on The Road are super excited because this conference has a diverse line-up of sessions geared toward parents and caregivers of adults who have Down syndrome! So far, we have 14 different sessions that focus on adult issues, including a keynote address from Patti Saylor on the progress that has been made by #JusticeForEthan.

This is just the beginning of a new source of information that will address our needs through virtual education with 321eLearning. If you have ideas for sessions you would like to see - even after the conference - feel free to email me!

At first, I couldn't believe it had happened. Of course I thought it was a mistake. I spent most of the past twelve months bouncing back and forth between depression and anger. It seemed like the anger was the only thing that pulled me out of the depression. I've also done a lot of bargaining. "If I work hard enough to get "justice"....

If he was here, what would Dr. Martin Luther King Jr. say and do about the current issues in our community?

Today, as we celebrate Dr.King’s impact on our world, it’s a good time to reflect on our advocacy in the disability community. Most would agree that MLK would have something to say about the rallies and demonstrations around race and policing. Would he branch out and extend his hand to include the disability community in his work? I think he would. While some question, and even criticize efforts to widen the discussion of improved policing to include other disenfranchised groups, I believe Dr. King would be among the first to emphasize that #AllLivesMatter.

I've been thinking a lot about the word "legacy" today. It seems so incredible to me that we could be talking about Ethan - someone I knew - someone's child, grandchild, nephew, brother - someone the same age as Josh - in terms of his "legacy" already.

I've been scouring the internet to try to find something that made sense to me. The first thing that jumped out at me was this quote.

"as you go through life, no matter what you do, or how you do it, you leave a little footprint, and that's your legacy."

This is one time that I am happy to be proven wrong! There was a great deal of "spirited debate" about Governor O'Malley's response to Emma's petition on Change.org. Some of us were disappointed that he only committed to one of the two requests: training, but not an independent investigation. Some thought "training" was meant to placate a grieving family - a political move more than a real solution. Some even thought training would be dangerous and serve to further stigmatize our loved ones.

The Right Leadership

I for one, was more hopeful about the Commission once I heard who was going to be at the helm. If anyone could take the opportunity and make the best of it - it was Tim Shriver.

Many of our community, when we hear the name Ethan Saylor, get a battle weary sensation tingling under the skin, and an ache that surrounds our heart. So much for “justice” and all that that implies…I know. I get it. However, I’m going to ask that you continue to read and keep talking about Ethan and I’ll tell you why.

First, because change cannot come if people give up asking for it. Ethan’s life was too high a price to pay. Before the name Ethan Saylor came into my vision, I had no idea how unjust the system is when it comes to police accountability and inquiries. With all of the recent grand jury scrutinization, it is important that we keep talking about the need for independent investigations and how the death of Ethan Saylor at the hands of three off duty officers is not something to be swept under the rug; his life had value and those who stole him from his family and his community should be held accountable.#JusticeForEthan must remind and rally us to hold officers accountable as we move forward. I wish I knew how to do this more concretely, but I hope if we keep talking about it we’ll find someone who can make this change.Have you read about Michael Bell and what his father has learned and done since his son was killed by police? Change doesn’t happen in silence. Well, actually, some change does happen in silence, and it is the scariest. We cannot allow silent changes, we have to be a part of the noise. David Perry speaks to thecult of compliance, his determination to voice on this subject ranges across platforms. Ethan’s life has been one of many, too many, to be lost without consequence.